HOW DOES YOUR OWN
GOOD FORTUNE MEASURE UP?
Journal of Healing – Feb. 12, 2003
By Mary Koch

Every once in a while someone says to me, "Whenever I think about your husband, I realize how fortunate I am." I know sympathy is intended, but I'm pretty sure John isn't interested in being anyone's litmus test for good or bad fortune.

For more than nine years, my husband has not been able to move, talk or eat. Other than that, he seems to consider himself reasonably fortunate. His official diagnosis following his stroke in 1993 was "Locked-In Syndrome," meaning a healthy mind is imprisoned by a body that cannot move or speak.

Medical progress – especially the artificial respiration that helped save my husband's life – has resulted in an increasing number of locked-in patients. There are no official statistics, but one expert quoted in The Jan. 20 New Yorker magazine estimates there are 25,000 "locked-in" patients in the United States..

Over the years I've learned that what originally seemed to be a precise diagnosis has a lot of variables – as varied as each individual who is so diagnosed.

The New Yorker article tells about a wealthy Peruvian, locked-in as the result of total paralysis from amyotrophic lateral sclerosis (A.L.S., or Lou Gehrig's disease.)

I used to say John was totally paralyzed, but I have a new appreciation for the word total. The man from Peru cannot breathe without a respirator. He can't open his eyes, so one lid is propped open allowing him to see. But he can't move his eyeball. He cannot keep his mouth closed, so it hangs open, his jaw slack. He has no way, when asked a question, of signaling "yes" or "no."

John's condition was never that severe. After nine years of therapy, he has considerable head and mouth movement, can manipulate a couple fingers and make some sounds.

"I know you're not 'locked-in', John," a friend wrote when she sent The New Yorker article. The official, medical view is that there's little or no hope for "locked-in" patients. Yet many people pry their way out. A "locked-in" patient interviewed in the New Yorker article, a former lawyer in Germany, explains it this way: "As long as I can express myself, I'm not locked in."

Another so-called "locked-in" individual is Philippe Vigand, a French man who with his wife Stephane wrote a book, "Only the Eyes Say Yes." Vigand was in his early 30s in 1990 when he suffered a vascular accident that left him "locked-in." In the intervening years, besides writing a book, he fathered the couple's third child.

Vigand says by all rights he should have died when the blood flow was cut off to his brain. The fact that he is alive is a miracle, as if the hangman's rope had broken. But, he adds, "The miracle is not so much that the rope broke but that so much distance has been traveled since."

I too have watched my husband travel a great distance. That distance has given him a new perspective, just as astronauts have a new perspective of earth when they see at it from space.

"I look at things differently now," John spelled out recently with eye-blinks. Vigand, who also uses eye-blinks to communicate, proclaims, "I blink, therefore I am!"

Writer Joan Didion once observed that "to have that sense of one's intrinsic worth which constitutes self-respect is potentially to have everything . . . to lack it is to be locked within oneself, paradoxically incapable of either love or indifference."

So you tell me. Who is locked in? And who is more – or less – fortunate?